Distilbene: the wrath of Valérie, whose daughter was born with a fragment of the uterus

There was intuition, doubt, anger. Now comes the quieter time when Marion wants answers. Is his birth, 24 years ago, with a scrap of the uterus and vagina, related to Distilbene, this drug taken by his grandmother and which has already left its toxic imprint on his mother? For the first time, a study conducted by gynecologists and the reference association Réseau DES France, shows an increased incidence of these genital malformations in those who are called "granddaughters Distilbène" or "third generation" .

Because it is indeed a family story in question, a heavy inheritance, from mother to daughter (s). In 1967 - ten years before her ban in France and the outbreak of the scandal - Denise, 82 years old today, was prescribed the little candy-like tablet. “It was given to avoid miscarriages. She wanted to protect her pregnancy, to protect me, ”insists her daughter Valérie, long blonde hair framing large clear eyes.

Two late miscarriages

In 1995, the management assistant in Saint-Nazaire (Loire-Atlantique) in turn became a mother. Marion was born a little early, nothing very worrying. But then, things get complicated when a second baby comes to curl up in his belly. Contractions settle in the second month. Just before the sixth, the membranes break, Valérie loses her little boy. Then, it is a granddaughter, who "fell from the nest", she says, in the fourth month of pregnancy.

“My gynecologist then asked me if my mother had taken Distilbene; the family doctor finds the prescriptions in his archives. Everything can be explained, I have a characteristic uterus with a softened collar, which cannot hold babies, ”she continues, pausing in her story. In order not to let the medicine win and have this other longed-for other child, Valérie hangs on. At her new pregnancy, a ring is immediately put on. She is bedridden. Nine months, where she "put herself in brackets" to welcome Adrien.

But in 2012, a new blow fell on the family. Nobody understands, why at 17, Marion still does not have her period. "You haven't drunk enough water, I can't see anything!" ", The doctor yells at her when she has a check-up ultrasound. And for good reason, if the screen is blank, it is that the adolescent has in fact only a fragment of uterus and two centimeters of vagina, when the average is seven.

Later, a name is given: Rokitansky syndrome (also known by the abbreviation MRKH). “At that point, my brain goes into total denial. I do not consciously think about the fact that I could not have children but I become addicted to sport and anorexic. I think I wanted to be like in magazines, if not to be like other women, "says the now 24-year-old lawyer.

"We demand scientific studies"

An indelicate gynecologist gives her exercises with a vaginal dilator, but with disastrous indications and follow-up. Each day, pencil in the mouth to contain her tears and Pink Floyd thoroughly to let her spirit escape, Marion pushes the object. His bladder keeps important stigma. Today, the theater enthusiast is getting better, happy with a lover and the idea of ​​perhaps one day becoming a mother by adoption. "I want to inform women because all of this is so taboo and unrecognized," says the woman her mother proudly describes as "warrior".

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The new study on the third generation Distilbène remains very vague for her, but for Valérie, it looks like a bomb. “I had participated in an investigation. When the president of the association called me to tell me that there was a questioning between DES ( Editor's note: abbreviation of diethylstilbestrol, the synthetic hormone marketed under the name of Distilbene ) and MRKH, I burst into tears . This drug is still catching up with us. Today, faced with the presumption, we are calling for further scientific studies. You have to know if it is a genetic defect or a new toxic effect, ”says the 50-year-old who does not rule out taking legal proceedings. "I owe it to Marion, to the babies I couldn't get to know. And in tribute to all women victims of Distilbene. »« Of course if necessary, we will go to court! Marion agrees. If the poison is transmitted, so is the strength and fighting spirit.

Distilbene: five dates to understand

1948. Beginning of the commercialization of diethylstilbestrol (DES), a synthetic hormone supposed to prevent miscarriages. In 30 years, 200,000 future mothers will be exposed there.

1977. Accused of causing cancer of the vagina, cervix, malformations of girls who have been exposed to it in utero, the drug is banned in France, six years after the United States. Sons can also be affected (testicular cancer, genital malformations).

October 1994. Creation of the DES France Network, an association of victims approved by the Ministry of Health and of which the writer Marie Darrieussecq is the godmother.

March 2019. Justice has once again recognized that DES, which was marketed by UCB Pharma, may have effects on the grandchildren of women who took it during their pregnancy. Among the main possible consequences, sequelae of prematurity.

January 31, 2020. The DES Network organizes, in Paris, the general assembly of its 25 years. He asked the ministry for a "status" for DES girls, so that they could benefit from specific medical follow-up and 100% reimbursed.